January 5, 2007 at 6:05 am #14980caroline-stouferParticipant
I was diagnosed with CC in October 2005. My oncologist is in Grand Junction, Colorado which is a two hour drive from where I live. I had my liver resected in November 2005 at University Hospital in Denver. Unfortunately, my liver grew back with more tumors. I did a clinical trial last spring, but it didn’t work out. I started chemo in May and have stabilized the tumors in my liver. They did find cancer in a lymph node during my surgery and told me my cancer would probably come back which it did. It also went to my hip bone and I had radiation in November to treat that.
I have a really good rapport with my oncologist, and I think that is very critical. I also work hard to maintain a positive attitude for two reasons. One is that it helps fight the cancer, and two is that if the disease does take me, which they tell me it will, I won’t have spent my last days on earth being down, in a bad mood, a burden to others. I do take Zoloft to help combat depression which I wish I had taken years ago!
I am fortunate in that I am self-employed and can work my schedule around my treatments. I have good insurance, a very supportive husband, family, and community.
My husband is from Jackson, Mississippi and he has a sister-in-law who is a nurse there. We’ve heard that the University Hospital in Jackson is very good, as well as the Baptist and the Catholic hospitals. I have heard that University hospitals are usually on the cutting edge and have more access to the most current treatments. I’ve also heard great things about M.D. Anderson, but some people have told me that it is very big and like an assembly line. The Mayo Clinics and Sloans-Kettering are also very reputable.
While my oncologist probably hasn’t had that many CC cases he does call and consult with other specialists, both in Colorado and at Mayo clinic. He has gone to bat for me with the insurance company and researches clinical trials on the internet. I have gotten information from this website on clinical trials and he has followed up on those as well. I think my doctor is very intuitive and has tried to introduce chemo to me as gradual as possible to maintain my quality of life.
If you would like me to conact my sister-in-law, the nurse in Jackson, about her opinion on what is the best place for cancer treatment there, I’d be happy to do that.
It is hardest when you’re first diagnosed and don’t have a plan yet.
-Caroline Stoufer, e-mail address: firstname.lastname@example.org, phone 970-325-4071January 4, 2007 at 9:23 pm #14979malliegParticipant
I just wanted to reiterate Jeff’s thoughts. Jeff, I found your message very touching and Very True!! It is so important to stay hopeful and have support. It helps on so many levels. Keep in mind, everyone’s body is different and has different tolerances. Life is full of unpredictable situations that we have no control over. What we can control is our attitude.
My mother, stage IV, has been fighting this cancer for about 10 months. She has been on chemo for 9 straight months. She absolutely amazes me and so many others with her strength and hopeful attitude. Everyone has their good and bad days. Just remember to try to laugh and love as much as possible…and above all have faith and pray. These things have truly helped my mom and our family in so many ways!
God Bless! AlisonJanuary 4, 2007 at 1:34 am #14978jeffgMember
Celia: There is plenty of hope and prayers coming your way. I’ve been fighting this dragon of CC for years and know of others who have done the same. Yes we all have different situations and outcomes, but perserverance, strength, and faith will take your Husband and your family the distance meant to be. It is a worrisome unfortunate journey I wish none of us have to travel. March, 07 will be 8 years for me. Surgery, chemo, radiation, and now back to try another regimen of chemo next week, if my CT tomorrow shows there is still some hope to be with my loved ones just a little longer. I tell you this so your aware there is definitely hope and the doctors can’t predict the duration of your battle as we are all different and respond different to different treatments. I’ve been told 6 months to 1 year several times but yet I’m writing to you aren’t I? This March will be my 30th wedding anniversary and I plan on going out to dinner with my wife Valerie and pig out ,chemo or not ! Celia, tell Richie to search for that inner strength and let it roar! I have many suggestions as well as others, but one for right now is to get richie on a prescription of 1 mg clonazepam to take 1 tablet each night before bedtime and additional tablet as needed for anxiety. I firmly believe it has been very helpful to me, as if your mind can’t get proper rest, neither does the rest of your body; Which to me means less stamina for your natural immune system. Enough of my rambling. Keep your chin up but also don’t forget to lean on someones shoulder and have a good old fashion cry as well. God Bless You All ! JeffJanuary 3, 2007 at 11:58 pm #14977joniMember
I, too am so sorry to hear about your husband. My husband, Mike, age 57, was diagnosed with cc last January. We have a 13 year old daughter. Find the best care possible, ask lots of questions, and research everything that you can find on the subject. No two patients’ disease is exactly the same; no treatments are identical.
Since Mike had no malignancies outside the liver, he was able to undergo chemoembolization last February and March. My thoughts and prayers are with you.
We have not established a blog on this site, but I’d be glad to share whatever I can with you – email@example.com. God Bless!January 3, 2007 at 7:06 pm #14976alisonParticipant
I was very sorry to read about your husband , my husband was 45 when he was diagnosed and it was an awful shock to be told there was no effective treatment. We too have teenagers .
I would echo everyone else , get as much information from as many sources as you can , this site is invaluble for this, as said before read all the posts and get as many medical opinions as possible to give you an informed choice of treament.
My best wishes to to you and all your family.
Alison , Jon’s wife UKJanuary 3, 2007 at 4:53 pm #14975teresaMember
Dear Celia, My prayers are with you all.
It is such a shock when you are told about CC. It is so rare and presents very late.
There are always other opinions other than your own doctors and what works for some will not work for others. Hang in there and try not to lose faith.
Please, please get second ,third or even fourth opinions Let us all hope and pray that you will find something that works for you all. You can only do your best at this time.
It may evolve that you will have to find out more information as you travel this road,
as others are so doing. Please read the messages on this site and take heed of all of the information. It does not matter what works so long as it does.
good luck. love and light XXXXXXX teresa (alan’s mom)January 3, 2007 at 3:06 pm #14974betty-johnsonParticipant
I’m so sorry that you and your family are having to go through this. CC is very rare and also very hard to diagnose. We considered going to M.D. Anderson but went to UAB, Birmingham instead since it was only two hours from Demopolis. You really need to be as close to home as possible because the journey in fighting this disease can be very hard on you, your husband and your children. I think we received very good care at UAB; in fact our doctors communicated with Mayo Clinic about Sam’s case. It will be difficult so try to make it as easy as possible on yourself; make your decision as to where you want to be treated and then don’t look back as to whether you made the right choice or not. If you need any other information, please call or send me an e-mail at firstname.lastname@example.org. Sam’s history is under
johnsonal.blogspot.com. if you want to read it. My thoughts and prayers will be with you and please call if I can do anything for you.
Betty JohnsonJanuary 3, 2007 at 2:58 pm #14973saraMember
Welcome, Celia. I’m glad you found this board. I will echo Mary’s sentiments – you need to get a second/third/fourth opinion. At the risk of sounding flippant: This is not breast cancer. There is no established protocol on attacking the cancer with chemo/radiation. Consequently, not just any oncologist can treat it. You need to get your husband to a hospital where the oncologist sees hundreds of CC cases, rather than just a few cases. And while these highly specialized oncologists may not be able to provide a cure, they are knowledgeable about the cutting edge of treatment options (and are probably even heading up the research). The big hospital names in the US are MD Anderson (Houston, TX), Sloane Kettering (New York, NY), and Mayo (Rochester, MN). There are other great doctors at various hospitals around the country, but these are the big hospitals. I would definitely seek more opinions from at least one of these hospitals.January 3, 2007 at 1:24 pm #14972marylloydParticipant
I’m so sorry to hear about your husband. It breaks my heart to hear about others going through this ecspecially at such a young age with young children. All I can say as far as advice is that you need to get a second opinion. Is there any way you could go to MD Anderson in Houston? They are supposed to be one of the best places in the country for liver surgery and treating cancer. My husband was diagnosed in June at age 58 and was told by the medical team that diagnosed him to basically go home and plan his funeral. Several days after being told that we met with surgeons( which we had to arrange on our own) and they gave us an entirely different outlook. They were unable to do the resection but treated him aggressively with chemo and radiation and 6 months later he is doing very well and his tumor can’t be seen on a cat scan. We don’t know if it’s the Drs., the carrot juice or prayer but things do work to treat this disease and you must try anything you can to fight it. The Drs. really don’t know that much about this cancer it is so rare, so when they give you statistics they are very limited and several years old. I believe they are learning new techniques all the time as far as treating CC so you must go somewhere where they have the ability and knowledge to give your husband the best possible chance for success! Best wishes Celia. Don’t lose faith- there are a lot of people here that have fought this disease for years and are still hanging in there. A cure may be just around the corner. MaryJanuary 3, 2007 at 1:33 am #310celiaParticipant
My husband has just been diagnosed with cholangiocarcinoma he is 42 years old and his name is Richie we have been married for 22 years on new years eve. We have three children. There ages are 18,16, and 8 years. The doctors say he only has months to live. We are all so upset we dont know what to do. Im trying to get other doctors to see him. Anyway does anybody out there have some advice for me please I need some friends. Thank all of whom may read this my name is Celia.
- You must be logged in to reply to this topic.